Sometimes wanting to stop meds

[jt12]

Ok so I'm just throwing this out there, but there are times I just want to stop taking my medication, does anyone else feel this way. I have slight tremors in my neck, my right leg drags a little, my right arm/ hand feel numb & my balance gets a little off, also my brain gets a bit foggy but these meds, ugh. Am I in denial or am I kind of on the crazy side for being ok with these symptoms?

[tid1]

I have been thinking of asking my Dr. about stopping the carbidopa-levodopa to see if it is helping or not. My symptoms haven't changed much and if anything have gotten a little worse, I have tremors in one arm and hand, especially when I am cold, stressed or exhausted. One foot sometimes drags & has muscle cramps and has numbness when I walk fast. (Only the treadmill and lots of walks has helped my foot.) The neurologist. said I have Dystonia in that foot. I also get leg cramps at night.

I am wondering if the original diagnosis of PD Is correct, or maybe I have Essential Tremors, that my dad had for many years. However I did read that you are not supposed to just stop carbidopa-levodopa without talking to your doctor as you have to phase off of it. I'm not sure what meds you are on but I would suggest talking to your doctor before stopping them.

[Rosabellazita in reply to tid1]

I am the same. I feel theres no difference un the only symptom i have ....so far...tremor in right hand. U m beginning to wonder why am i taking this. In going to wean off of it i think. See how the tremor reacts.

[NvaGivUp in reply to tid1]

The incorrect diagnosis rate is high

[parkie13]

en.m.wikipedia.org/wiki/Neu...

The above article refers to malignant neuroleptic syndrome, have to be careful when you reduce levodopa or a psychiatric medication. I have no idea how much would produce it

[jt12 in reply to parkie13]

Oh gosh! Thank you parkie13, after reading that I believe it’s a good idea to keep taking my meds. I’m still trying to get use to all the changes this diagnosis has made and I’ve never been really great at taking medication, I have to realize that this is my life now and it’s way better than what some people have to suffer with.

[Bailey_Texas in reply to jt12]

You do not know how bad you are until you stop your meds. I do well on my meds and have stopped using them to to see how bad i am. When i am off my meds i can not walk more than a few steps, my hands are stiff and i can not make a fist or hold any thing. I can not feed myself. The pain is more than i can stand.

[Bazillion in reply to Bailey_Texas]

Hi Bailey ,I agree. Whilst we don’t want to be on meds,most of us improve on them.

However, my PD specialist leaves the dosing to me now, as I’m sensible won’t take too much and know what I need and when I need them.

Reading some of the blogs I think some people are being over medicated.

Too many Drs still think one size fits all and don’t treat people individually. As we know ,no 2 people with PD are the same and need treatment specific to there needs, quite often it’s not increasing meds but adjusting times to suit around exercise,diet, what your needs are at different times of the day even.

Initially my Dr prescribe Madopar before going to bed.Why? I don’t have a problem at night so I don’t take it.

I was prescribed Madopar 125 3 a day plus 1er at night.I just take 1 in the morning with Premipexole and Azelect ,.Yes Meds start to wear off ,I shuffle a little but as I’m mostly relaxing in the evening reading watching tv and not really doing much don’t feel the need for pills.

If I’m going out or we have friends round I do take a Madopar about 4pm and that stops the shuffle .

To me exercising is as important as my meds, if not more important.I know the more I exercise the better I am.

We are all capable of doing far more than we think we are.

It’s all all about what’s right for you,what you are comfortable with.No more ,no less.

[Bailey_Texas in reply to Bazillion]

I too adjust my meds from time to time. I exercise every day.

[EJK1 in reply to Bailey_Texas]

Hi Bailey_Texas

This is my first time working with this blog. Anyway, I've had PD for 9 years, currently taking one 25-100 Carbidopa-Levodop tablet every 1 1/2 hours daily. The excessive amount, about 17 pills a day, I've taking for the last two years.

Question, if I'm able to get off this pill, what would happen to a person without any meds? My neurologist says I would just sit in a chair all the time. He mentioned a patient of his that did the same. Doesn't such a person still have to eat, make bathroom visits, and sleep etc. Or is it that such a PD person would do everything extremely slow? Everyone I've talked to says 17 tablets each day is excessive but no-one wants to get me off the amount or even know how to reduce the amount gradually.

I have a lot of pain on my left side from head to toe, and it's generally on a a 24/7/365 pain schedule. Sleeping is miserable in the neck area. Sometimes, walking through a thick wall of flame would be a relief! It's the pain which has ruined my quality of life, and I believe the Sinemet is the main cause.

My neurologist gave me Pramipexole or Mirapex to replace the Sinemet, but he didn't tell me how to make the switch. He doesn't know.

Ernie

[Bailey_Texas in reply to EJK1]

Hello

EJK1

I take 18 pills a day and i don't think it is excessive. It is only excessive if less would help just as much. e Pramipexole ie Requip can be taken with C/L and does help with down time and pain. I take 2 6 mg Ex release in the morning along with my C/L and my leg pain and hand pain is much less. A combination of the two works well for me. You might try taking less C/L and take some Pramipexole to help with the reduced amount of C/L. Beware of compulsive behavieir it can sneak up on you. I have gambling problems but keep it in check with the help of my wife. Makeyour care giver aware of this so they can look out for any changes.

Good luck

[NvaGivUp in reply to Bazillion]

What good advice. My wife read a line once in PG Wodehouse, 'Be your own lawyer' I needed to hear that, so I did, it saved us $22,000. Now I need to be my own Dr. Its our body our life. Most Drs do try but we become the experts over time. As a long term RN I know what goes on behind the scenes. Trust me, be more proactive, sell your case, research. Empower your life.

[JohnPepper]

You are perfectly normal! We all would like to be free of this terrible scourge. I have been very lucky, because I have been able to reverse many of my symptoms and have lived, medication-free for the past 15 years. Don''t get too excited, not just yet. What I have done, may or may not work for you. I see no reason why it would not work for you, but only you can make that happen.

Look at my profile and contact me. I do not charge anybody for what I do and it did not cost me a cent for what I did to reverse my Pd. I wrote a book about it and you can buy that book, but you can get all the information about what I did from my website, free of charge.

[PDConscience in reply to JohnPepper]

When touting the tale of his miraculous PD "reversal", JP fails to mention that he has never had a positive response to Sinemet (he failed the 'levodopa challenge'), was originally diagnosed with Essential Tremor (a non-parkinsonian condition), and - despite writing a book on the subject and obsessively hyping PD "reversal" - has steadfastly avoided the commonly available means for definitive confirmation of a genuine parkinsonian condition (DaTscan). And, with ET 8 times more common than PD, it's likely a guy without PD is preaching about "reversal" of a condition he never had. Unless/until that changes, a healthy dose of skepticism is the best medicine.

[Hidden in reply to PDConscience]

I never had a positive response to sinemet. Many other references to benefit of intense exercise

[PDConscience in reply to Hidden]

Well then, you're the perfect candidate for JP's magical "fast-walking PD reversal" formula - good luck!

[Hidden in reply to PDConscience]

thank you

[JosieDubbel in reply to PDConscience]

Not any reason to be so cynical. You only put negative energy to this group this way. Many people consider John Peppers contrbutions as helpful. Including me. Sometimes I feel like quiting this group because negativity is not good for me and my PD

[PDConscience in reply to JosieDubbel]

A few people may consider JP's "contributions" to be "helpful", while many others may wonder how on earth the notion that a person can "Reverse Parkinson's Disease" by walking fast is able to bypass the BS meters of seemingly intelligent people (without a single confirmed PD "reversal" after 15 years of hype). JP's wilful misrepresentation of established science is more likely to harm than help people seeking viable solutions. *And, yes, overly fragile/closed minds should avoid forums at all cost.

[JosieDubbel in reply to PDConscience]

The assumptionthat I have a closed and fragil mind is hilarious. But better not spend any of my energy on you. It is not worth it

[Bailey_Texas in reply to PDConscience]

Good morning

I agree 100% with you. But if john pepper can get some people up out of their bed or chair and exercising or just walking it is a good thing.

[PDConscience in reply to Bailey_Texas]

Whether it's intentional deceit or an unchecked god-complex, JP takes his "PD reversal" charade over the limits of decency when he makes the claim (in promoting his "PD Reversal" roadshow), "[In previous events] I was able to show everybody who was brave enough to let me show them... There were no failures... I am sure that everybody who shuffles and/or freezes is immediately able to walk properly, even people in wheelchairs…”.

Promising people in wheelchairs the ability to rise up and walk again is selling false hope and helps no one.

Source: reverseparkinsons.net/2017t...

[Bailey_Texas in reply to PDConscience]

You can not win this fight best to let be. If you need to carry on with it do iit with private messages. Been there done that.

[christyd65]

To the original question... Of course you're normal! I think about ditching the whole Medical regimen at least weekly. Is it a form of denial? Probably. But if it weren't for a little forms of denial in different areas I'm not sure I would ever make it with this diagnosis. of course I would always check with my doctor before ditching the whole process because you probably have actually made more progress than you think but sometimes just saying it out loud satisfies the urge without actually going through with it.

To the most recent replies just above... Are you kidding me? I left this site for quite some time because I got so tired of the same people snapping and biting each other... We have enough struggles with this disease and everything that it brings I didn't want to continue to hear the backbiting and infighting. The first time I get back on and here we are again. You guys were so busy snapping at each other that you didn't even actually answer the original question. There has to be another forum for your rants. I can't be the only one that gets tired of it.

[richardo123]

You need to find words to turn to during your times of wanting to give up meds. I loved my job and put in for long term disability which I am still waiting for approval on. It's been submitted for two months now. I get thinking ah go back to work. Give up company vehicle all gas paid and maintenance and a job I love. I have not selected any hobbies yet only tango listens once a week. Those words I turn to is QUALITY OF LIFE. After 15yrs I still think OF giving up the pills but I grasp unto those 3 words. QUALIY OF LIFE.

[faridaro]

Thank you John for your effort to share your experience and bring hope to the rest of us. Well, some people think it might be false hope, but I'd rather take false hope than no hope - our mind is a powerful healing tool and supposedly placebo effect creates strong positive connection between the brain and body which has been documented through research studies. I'd rather take a placebo than medication if I had a choice, not saying though that walking is placebo because it definitely benefits lymph system by helping to rid toxins in your body on top of many other numerous benefits (generation of BDNF is one of them, article birdeemag.com/this-is-your-...

Our bodies are designed for walking and we definitely don't get enough of it.

And if anything else, walking improves colon function and regularity with which many PD patients have issues.

[Enidah]

John, I think there's room for all of us in this interaction and I'm sure you've been very beneficial for many many people. But I also believe that without the meds most of us couldn't do the fast walking. I know I couldn't. It's definitely a combination of the meds and exercise for me. Otherwise, besides walking difficulties, the dystonia in my back just kills me and it's too hard even to be upright.

[DianeF]

I appreciate everyone’s input. My thought is always if I am able to to walk away with something useful for myself , I am happy. We are all on this site to gain information. So what if someone repeats themselves? Then don’t read that post. I need exercise and I need medication. Of course I wish I did not need the medication, but if I didn’t, I couldn’t move. Everyone is different but sharing information about this disease and different approaches is crucial.

[NvaGivUp]

You know heres the thing. Is PD causing that shake or the meds? Im now 100% convinced that at least 50% of the symptoms are in the mind i.e. a product of worry, anxiety, too much thinking about it. Exercise exercise exercise. Sex. Fun. Keeping positive

[Annie81963]

I too have thought of going off the meds ,but reconsidered because I thought about all the times I forgot to take my meds and remember how terrible I feel with just missing a dose or two. I could not even imagine how terrible I might feel without any meds at all.

I agree with NvaGivUp, exercise helps a lot and worrying creates more problems. Only you know what works for you, one day at a time is my motto. Good luck.